Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

First Post :) Gluten Associated Neurological Symptoms
0

13 posts in this topic

Hi all,

My first post here.

First, I tested negative for Celiac Disease. I do think, however, that I am sensitive to gluten nonetheless. I have little to no G.I. symptoms. All of my symptoms are neurologically based. The main ones are...

-Horrible brain fog (this is the main symptom)

-Occasional migraine-like headaches

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

-Loss of hunger (when its really bad)

-Dizziness

I've decided to start on an elimination diet and eat plain rice for a week or so. Then hopefully I'll see some improvement.

I'm just wondering if anyone else out there has experienced a similar set of symptoms and could tell me their story. I'm wondering if this is 100% curable and how long it might take to get appreciably better.

Thanks for your time and consideration.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Hi all,

My first post here.

First, I tested negative for Celiac Disease. I do think, however, that I am sensitive to gluten nonetheless. I have little to no G.I. symptoms. All of my symptoms are neurologically based. The main ones are...

-Horrible brain fog (this is the main symptom)

-Occasional migraine-like headaches

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

-Loss of hunger (when its really bad)

-Dizziness

I've decided to start on an elimination diet and eat plain rice for a week or so. Then hopefully I'll see some improvement.

I'm just wondering if anyone else out there has experienced a similar set of symptoms and could tell me their story. I'm wondering if this is 100% curable and how long it might take to get appreciably better.

Thanks for your time and consideration.

Hey man. Im new here too and dont know if I have celiac, so i cant really say. But my symptoms are mainly brain ones as well. I have these on your list:

-Horrible brain fog (this is the main symptom)

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

The brain fog went away after about 2 days gluten free. The fatigue as well, in a way. Leaves an empty feeling. Havent tested the last. You can read all my symptoms in my threadh in the pre testing category. See if you see other similarities.

Good luck! :)

0

Share this post


Link to post
Share on other sites

Have you considered getting testing for celiac first, before stopping the gluten? It would save having to do a challenge and potentially make yourself very ill later on :)

0

Share this post


Link to post
Share on other sites

Hey man. Im new here too and dont know if I have celiac, so i cant really say. But my symptoms are mainly brain ones as well. I have these on your list:

-Horrible brain fog (this is the main symptom)

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

The brain fog went away after about 2 days gluten free. The fatigue as well, in a way. Leaves an empty feeling. Havent tested the last. You can read all my symptoms in my threadh in the pre testing category. See if you see other similarities.

Good luck! :)

Hey Johan,

Thanks for the reply. It's great to know that someone else has experienced the same symptoms. The dysautonomia is especially rare it seems. That's great that your brain fog lifted after only 2 days gluten free! I am 5 days in and I actually feel worse. I think I could be going through withdrawal and I'm just hoping that I'll feel better within a week or two. I guess it just depends on the person. I'm very envious ;)

Have you considered getting testing for celiac first, before stopping the gluten? It would save having to do a challenge and potentially make yourself very ill later on :)

Hey Mushroom,

Not to be rude, but I mentioned in the very beginning of my post that I had been tested for Celiac Disease and it was negative. I have very few GI symptoms and when I do, they are all upper GI symptoms. The majority of people who are intolerant to gluten do not have "true" Celiac Disease. Some people, like Johan and I, have purely neurological symptoms. And it absolutely sucks... :angry:

0

Share this post


Link to post
Share on other sites

Hey Johan,

Thanks for the reply. It's great to know that someone else has experienced the same symptoms. The dysautonomia is especially rare it seems. That's great that your brain fog lifted after only 2 days gluten free! I am 5 days in and I actually feel worse. I think I could be going through withdrawal and I'm just hoping that I'll feel better within a week or two. I guess it just depends on the person. I'm very envious ;)

Hey Mushroom,

Not to be rude, but I mentioned in the very beginning of my post that I had been tested for Celiac Disease and it was negative. I have very few GI symptoms and when I do, they are all upper GI symptoms. The majority of people who are intolerant to gluten do not have "true" Celiac Disease. Some people, like Johan and I, have purely neurological symptoms. And it absolutely sucks... :angry:

I'm sorry, I don't know how I missed that :( since it was the first thing you said :rolleyes::wacko:

Yes, the neurological symptoms seem to cause the most problems, both in diagnosis and length of time it takes to recover, as well as just being generally suckey!! I am glad you put the "true" in quotes because there is still so much unknown about celiac. I have always said that the way it is used today just describes one form of gluten intolerance. :P

0

Share this post


Link to post
Share on other sites




Hi,

here's a list of what was causing my symptoms.

migrains, brain fog - rice alergy, wheat/rye alergy - including inhaled wheat around bakeries, pizza places, I don't need to eat my allergens to get sick. Even someone else warming up rice gave me two days of bad migrain.

brain fog, orthostatic hypotension - yeast overgrowth and glutenning

fatigue - anything mentioned above plus nightshades and low blood pressure

loss of hunger - glutening and something else I still can't figure out - seems like I only get this when my thyroid is hyperactive which usualy happens a couple of days after gluten exposure.

Hope it helps a little. I know how hard it is to find what's causing which symptom. It took me about a year to figure the rice alergy since most of the rice products can also be cc with wheat so I always blamed cross contamination.

0

Share this post


Link to post
Share on other sites

Hi,

here's a list of what was causing my symptoms.

migrains, brain fog - rice alergy, wheat/rye alergy - including inhaled wheat around bakeries, pizza places, I don't need to eat my allergens to get sick. Even someone else warming up rice gave me two days of bad migrain.

brain fog, orthostatic hypotension - yeast overgrowth and glutenning

fatigue - anything mentioned above plus nightshades and low blood pressure

loss of hunger - glutening and something else I still can't figure out - seems like I only get this when my thyroid is hyperactive which usualy happens a couple of days after gluten exposure.

Hope it helps a little. I know how hard it is to find what's causing which symptom. It took me about a year to figure the rice alergy since most of the rice products can also be cc with wheat so I always blamed cross contamination.

It does help Pac, thank you. I'm sorry that you have so many intolerances. Hopefully, rice isn't an issue for me. I think it is uncommon to have a rice intolerance so I'm crossing my fingers. I'm just praying that what I'm going through right now is gluten and/or casein withdrawal.

0

Share this post


Link to post
Share on other sites

YES. I hate it. I hate it all.

I react this way to fructose, so I eat only meat/fish/eggs and plain rice. PM me if you want to talk about the diet. It's more varied than that and a little tricky to get the hang of, but solves all my problems when I do it right. It's been pretty great.

Except the dizziness on standing up. No idea why that's happening and would love to know.

0

Share this post


Link to post
Share on other sites

YES. I hate it. I hate it all.

I react this way to fructose, so I eat only meat/fish/eggs and plain rice. PM me if you want to talk about the diet. It's more varied than that and a little tricky to get the hang of, but solves all my problems when I do it right. It's been pretty great.

Except the dizziness on standing up. No idea why that's happening and would love to know.

that could be orthostatic hypotension...?POTS are you dehydrated, too little salt, or protein?
0

Share this post


Link to post
Share on other sites

Hi, I had all of your symtoms and after going gluten free, most were significantly lessened as to barely exist at all. I still experience occasional arthritic, nerve, and muscle pain, but I'm working on cutting all grains out completely to see if that helps. I also still get mildly dizzy but I've only been gluten free for about 3 weeks now so I'm hoping that with time, all my symptoms will subsisde. Good luck with your elimination diet!

Hi all,

My first post here.

First, I tested negative for Celiac Disease. I do think, however, that I am sensitive to gluten nonetheless. I have little to no G.I. symptoms. All of my symptoms are neurologically based. The main ones are...

-Horrible brain fog (this is the main symptom)

-Occasional migraine-like headaches

-Fatigue

-Dysautonomia (chronic orthostatic hypotension)

-Loss of hunger (when its really bad)

-Dizziness

I've decided to start on an elimination diet and eat plain rice for a week or so. Then hopefully I'll see some improvement.

I'm just wondering if anyone else out there has experienced a similar set of symptoms and could tell me their story. I'm wondering if this is 100% curable and how long it might take to get appreciably better.

Thanks for your time and consideration.

0

Share this post


Link to post
Share on other sites

that could be orthostatic hypotension...?POTS are you dehydrated, too little salt, or protein?

It's totally orthostatic hypotension. I only get it after my evening glass of wine, but that has never happened before. I checked and alcohol should only be cause if I'm overdoing it, but if anything I'm drinking less than a whole glass. Nonetheless, could be causing dehydration.

I have iron overload and eat way too much protein (not by choice), so dehydration from the alcohol seems likeliest. I'll check with the doctors at Mayo next month just to make sure it isn't something more serious...!

0

Share this post


Link to post
Share on other sites

It's totally orthostatic hypotension. I only get it after my evening glass of wine, but that has never happened before. I checked and alcohol should only be cause if I'm overdoing it, but if anything I'm drinking less than a whole glass. Nonetheless, could be causing dehydration.

I have iron overload and eat way too much protein (not by choice), so dehydration from the alcohol seems likeliest. I'll check with the doctors at Mayo next month just to make sure it isn't something more serious...!

How is your blood level of protein? eating it is not the same as absorbing it....?digestive enzymes? the wine may be the "straw/camels back" routine...end of day, relaxed from the wine...etc. perhaps try the wine at a different time of the day?
0

Share this post


Link to post
Share on other sites

Hope you are feeling better! My symptoms were mostly nuerological as well. In retrospect I did have some GI upset...thought it was the green chili suace! ( I live in baja, Mx.)But not classic celiac disease GI problems.

Brain fog almost gone after six months. Just in the morning now. Nueromuscular problems better ...75% or so. It IS discouraging that they persist to some degree. I went all the way to cerebellar ataxia...could hardly walk. Thought that I had MS. So I am much better now and have accepted that it takes a long time to recover . I was a windsurfer, and have to leave it. but I can sail in my 25' sloop in light winds. It is a matter of accepting what you CAN do!

Remember that what is called celiac disease is long standing condition, tissue changes due to the inflammatory effects of the auto immune response. Mine was undiagnosed for 15 years... I have Type 1 diabetes also, and symptoms were attributed to that. It is clear that there are huge ranges in sensitivity and types of reactions. Hence cross allergies(e.g. milk for some) and variations in severity. Sadly, It is increasingly clear to me that many gluten-free products are not, and restaurants are very dangerous to me . Oil seems to transfer allergens even if breading, etc is gluten-free...maybe even cutting boards? I get a nuerological slam when I eat out now...I seem to be getting more sensitive.

Fortunately I like to cook, and my wife likes gluten-free food. We focus on a natural diet, as in no processed food.

Tortillas, beans, rice, fruit, fish and a little meat kept people healthy for thousands of years. gluten-free cake, cookies, mixes are Frankenstein foods to me, edible food like substances, not food. They are miracles of chemistry...but who knows what those chemicals do to you in the long run? Why trust the  food science industry that got me into trouble in the first place? I can't take the chance.

Good luck!

Ed

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,116
    • Total Posts
      919,451
  • Topics

  • Posts

    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,155
    • Most Online
      1,763

    Newest Member
    AndiR
    Joined